Wow!! Now that I have regulated and understand the peaks of the steroids, I can tailor them so that I take them at hours that allow me to sleep. I have found that if I take the first set of steroids at 9am and take the 2nd set of steroids at 9pm, I can sleep. This is because I seem to have a 3 hour energy boost around 4pm. So that is why when the doctors told me to take the steroids around 4pm I would be wide awake at 1 am until 5am. I feel great!!! I just hope that when I start to wean off of these that i continue to feel wonderful! I know that my immune system is very compromised and working in the hospital could put me at serious risk for a virus or worse 😦 and I will NOT take this chance. I feel like I have new life!!! I have no fear! I feel like I can do anything I set my mindto do. I am so happy to be alive. The colors of life are beautiful all around me.
I feel so bad for the the poor souls who are suffering so badly with this terrible disease. I wish I could reach out to them.
I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.